How we got dementia on the global health agenda – A long journey
Starting from scratch
When I started my work at Alzheimer’s Disease International (ADI) by the end of 2006, I learned from the representatives from Alzheimer associations in the lower and middle-income countries that dementia should get on the global health agenda and therefore needed to become a priority of the World Health Organization (WHO), before their governments would take any action. A main reason is that these governments have little expertise in developing health policies and rely strongly on the work of WHO through their 6 regional and 150 country offices.
There was not much at that time. No WHO plan or policy. But with support of our large ADI members and a few foundations we put together a report with the 10/66 Dementia Research Group.
First World Alzheimer Report
A systematic review of all dementia prevalence studies was published in the first World Alzheimer Report in 2009. The report got a lot of media attention and was cited in many publications in the years after. The same happened with the 2010 report on the global cost of dementia in 2010. The global cost estimation of $604 billion has made many policy makers aware of the size of the problem.
Providing these data has been the foundation of global dementia advocacy and the World Alzheimer Reports have continued to be published after 2010 on other important topics like the benefits of early diagnosis and intervention; stigma; long-term care and prevention and risk reduction.
Visibility at WHO meetings and 2012 report
Providing the data was a first pillar of advocacy, the second was to make ourselves visible at WHO meetings around the world. Over the years we were present and made statements at all the regional meetings until one day I got feedback from our participant at the Middle East meeting who reported that Director General, Margaret Chan, a bit annoyed said: “everywhere I come I see these Alzheimer people!” From that day I believed we could win this battle.
This report, Dementia: A Public Health Priority. The report was launched in Geneva in April 2012. It was and still is a very good report that can be found on the WHO website.
People with dementia spokespersons
Another important strategy was presenting family members and ultimately people with dementia as our main spokespersons. In my opinion, this is so much more powerful than having experts from the NGOs or academia telling the story of dementia. These are both important to give background information and frame the topic, but policy makers need to hear people from the real world to talk about the impact this disease has in their lives. Politicians need to become aware that it is their voters who get hit as a person with the disease or family or friend and that there are many of them.
Another landmark: G8 Summit and WHO Ministerial meeting
Prime Minister Cameron of the UK brought together all Health Ministers, relevant academia, industry, NGOs and other stakeholders like WHO and OECD in a G8 Summit in London in December 2013. This created a sense of urgency that was new and an understanding that all stakeholders need to work together to solve the issue of dementia. One of the follow ups was a Ministerial meeting on dementia at WHO headquarters in Geneva in March 2015. As this was not a decision-making meeting, there were no clear follow up plans and ADI took the initiative of a declaration that was supported by other NGOs, including many Alzheimer associations from around the world. We asked for next steps, including a global plan and a commitment to invest at least 1% of the cost of dementia into research.
Finally a WHO plan
To get formal decisions of WHO, you need the support of at least one country that is in the Board of the organisation and is willing to suggest an agenda item. The Dominican Republic surprised (almost) everyone by doing this and Switzerland supported immediately and many other countries supported the request. After consultations, a final draft went to the Board in January 2017 and the plan was approved in the General Assembly of May 2017. The plan is very comprehensive and has clear targets and indicators to measure progress on those targets. The seven areas of the plan are: 1) making dementia a public health priority; 2) awareness raising and promoting dementia friendly communities; 3) prevention and risk reduction; 4) diagnosis, treatment and care; 5) support for caregivers; 6) monitoring and data collection and 7) stimulating research. WHO based this plan on the notion to protect the rights of people with dementia.
The most important target is probably that 75% of all WHO member states should have a dementia plan or policy in place by 2025.
What I have learned
Advocacy is a crucial part of the work of a patient organisation. It is needed if you want to expand from direct services to the people or cause you work for, to a higher and more comprehensive level: changing systems.
A first lesson is doing your homework by creating a reliable organisation, collecting the data and develop a strategy to become more visible and tell about the data and about why your cause is important. Using the right spokespersons and be consistent in your message is another one. And then finding champions and create alliances. These elements together create capacity for change. There is no guarantee, but these are important conditions to make it happen. Finally, you need what I would like to call stamina. Keep moving on and never give up!
World Alzheimer Report 2015: https://www.alz.co.uk/research/world-report-2015
WHO Report, Dementia. A Public Health Priority: https://www.who.int/mental_health/publications/dementia_report_2012/en/
WHO Global action plan on dementia: https://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/